Monday, 30 August 2010

Just a quick update to allay those pesky rumours. I am in the Land of the Living. Well sort of. If the Land of the Living comprises the carpet locked nation of my bed and the small colonial island known as my couch. I have not decided to forsake all worldly possessions and move into a cave sans internet. Though it is tempting. I have not been so embarrassed by Australia's pathetic political situation that I am ashamed to show my keystrokes to the world. It does however, leave me with a hollow feeling deep inside. Nor have I been kidnapped by Johnny Depp and been forced to do his sexual bidding (although I would not be adverse to such a situation should he be reading. Am willing to get on board with Stockholm Syndrome on day one. Am also willing to provide own bath products to overcome his lack of personal hygiene should this situation occur).

No no. Nothing so interesting. Instead it's been a case of The Blargh invading once more, life becoming way too busy, visitors, and a continuing battle of wits with Blogger for which I am woefully under resourced.

For those who have taken time to comment, which is much appreciated, I am not being a biatch and ignoring you. Blogger has decided to give me intermittent access to moderate my comments. Sometimes it'll show them. Sometimes it wont. Some days it will show me comments from weeks ago and then they will simply disappear into the ether. I often wonder if they have been sucked into the mystical realm of odd socks, all the packets of Christmas cards I buy on special in the after Christmas sales so I'll be prepared for next Christmas but never find when December rocks around again, the elusive weapons of mass destruction, and the Amelia Earhart. It has also decided to delete three posts I had ready to post in my drafts folder (and no, I was not bright enough to save a copy elsewhere) and told me that my blog didn't exist even though I was staring at it in another tab. I am determined to win this battle even if it kills me, and it just might. Well that or at least tax Eunice to the point of no return.

(I have a feeling this guy is hanging out in my Blogger account and causing all the mischief. Maybe I need to take some tips from this instructional video on how to deal with him.)

Reading has also been a bit beyond old Eunice for a while now so my list of blogs to read is now getting to unassailable levels. I manage one every now and then but that's about it. I may have to toss my list in the bin and begin again when I can concentrate for more than two nanoseconds.

Okay have been staring vaguely at the screen for about 10 mins now. Time to end. Hopefully I can soon send The Blargh packing, will win the war with Blogger, and put together enough coherent sentences to create a post.

Until then,

.... So long, farewell, Auf wiedersehen, good night,
I hate to go and leave this pretty sight.
So long, farewell, Auf wiedersehen, adieu,
Adieu, adieu, to yieu and yieu and yieu.

So long, farewell, Au'voir, auf wiedersehen,
I'd like to stay and taste my first champagne
So long, farewell, Auf wiedersehen, goodbye,
I leave and heave a sigh and say goodbye,
Good bye .....

Ah, The Sound of Music, you do make everything better. Will now drag my butt to my shower chair and break out in a breathtaking rendition of How do you solve a problem like Maria.

Sunday, 15 August 2010

Do you ever hop into the shower and find that there is one errant little jet of water, that acts like a heat seeking missile going straight for your face? You move left. You move right. You do handstands and turn your back. Yet it still hits you right in between your eyes, hard, and has enough cast off to go into both your eyes so you stand there blinking and cursing whatever you did to deserve an annoying spit in the face from the universe? Yes? No? Well for me the last few days have been one shower jet watergorby in the face, literally and figuratively.

Though I like to remind myself things could be worse.

I had the audacity to go out with my physio girls for dinner (post to come, I wont sully that fun with today's gripe) and now am being punished by my puritanical body. If I'm honest I was on the down slope pre-dinner and if it wasn't for the joy of seeing my ladies, I would normally have stayed home and crawled up in a ball to die slowly under my doona. But, sometimes it's just worth the post-fun hijinks.

The past day and a half has been unpleasant to say the least. Stuck in bed with barely enough energy or wherewithall to be peeved that I was stuck in bed. Well if I'm truthful I am still in bed. But as I'm sitting up, have scoured the sickly sludge off my body, and have managed to resist the siren call of my pjs, I feel technically, I can finally be classed as up and about.

Really bed is the only place to be if you can't reach triple digits in your bp. I tried. I really did. But swearing at my blood vessels and threatening them with all sorts of nastiness just didn't seem to work. I also tried to be positive. I repeated "I think I can. I think I can" ad nauseum, but that also proved about as useful as a tube of SPF 30 on the surface of the sun. I was proud to get to a decent 92/41 by about 9pm last night, thanks of course to my Uri Geller spoon bending and healing powers of positivity. If I could've stood up, I would have danced for joy.

Haven't eaten a great deal since Friday night. Still not hungry and just a tad nauseous, so the occasional nibble of something salt laced is probably about it for now. I am hoping this lack of intake will aid my plans to decrease the size of my ever increasing rear end. Hell, it has to work better than my regular method of LMAO, which is simply not working and frankly I am beginning to feel like a liar every time I type those four letters.

Note to self: do not comment or message anyone whilst in this state of uselessness. Messages may be incoherent at best, or come out the wrong way entirely. I've heard this is how wars start. Well that and something about Texas Tea. At the time you think you are exceedingly eloquent and humorous. However, this judgement is being filtered by a brain severely lacking is O2. Really it's the equivalent of drunk dialling, minus all the "I loves yous".

I did manage a shower yesterday, which was a feat in itself. I made it from my bed, to the shower, onto my shower chair, managed to clean off the hideous paint pealing bed funk to a tolerable level, get out, get dressed and make it back to bed without serious incident. This is pretty impressive even on a good day. There have been many a time where I either, didn't make it, fell off my shower chair, or missed it when I sat down. Naked humiliation was avoided (apart from the quick glimpse of pasty marshmallow I caught in the mirror). No new bruises were acquired. Go me. I did manage a minor scalding when I forgot how to use the cold tap, but that is still a good day. I did have one of those errant spouts. I moved left. I moved right. It still found my face. Solution. Give in and put face washer on face, lean head against wall and let the water fall. Much easier than fighting.

The rest of the day was spent either comatose or watching episodes of 30 Rock. Kenneth Parcell can get me through many a tough time. 20 minute episodes are good when your brain is mush. Even better if you have seen the episodes before and you don't have to try and follow a plot.

One problem with sleeping so much is you dehydrate, and if you have Bob you dehydrate at light speed. Today I have lips with cracks the size of the San Andreas and there is no lip balm that can fix that quickly. So today's plan is to guzzle enough water to cover today and yesterday. This also means many a pee trip from bed to loo. I think all this to and fro classes as my cardio for the day so no need to break out the Wii. I will now put on my headband, sexy leotard, and Olivia Newton-John's, Physical on loop, to make me really feel like I'm on my way to buns of steel.

I'm hot, and not in the good way. Well I don't actually know if I've ever been hot in the good way. Though I did get called a MILF by some delightful teenagers last year. Does that count as a good or bad thing? I'm still not sure. I do know that I am the bad type of hot at the moment. It's a delightful Winters day here is Aus. Misty rain, soggy world, 8C if we're lucky, and I'm rocking my Summer's best of t-shirt bare feet and rolled up trackie dacks (my attempt at pretending I am cold like normal people). The last three night's I've slept with either a sheet or nothing, whilst Mr Grumpy had the electric blanket on max, the doona up round his ears and lay there shivering. The rest of the house is wearing Arctic thermals, jumpers and thick wool socks and I have heat intolerance up the wazoo. Stupid body temp is higher than usual, and it's always high. If I sweated I'd be lying in a salty pool by now. All in all I guess it helps with our heating bill, especially when I'm home by myself. You know, silver linings and all.

I think I'm going to go with the whole "and on the last day He rested" plan, it is Sunday after all. Saturday was completely misplaced. It is obviously hanging out with my Bedazzler and single socks. I'm thinking about requesting a do-over. Is that possible for a whole day? Let me know.

Friday, 13 August 2010

Okay, which bastard thought it'd be hilarious to steal my Bedazzler? I am going to hunt you down as soon as I can stand, and pull your spleen out your left nostril. As some of you may have noticed my insane attempt to be perky at least one day a week has gone awry. Not like anyone is truly surprised, well except for that tiny delusional anal portion of my mind that still thinks it can do everything. With the absence of my metaphorical Bedazzler, these last few weeks at Château Rusty have been rather bereft of sparkly rhinestones and crystals. I have resorted to watching hours of The People's Court, and even made it through an entire episode of Paris Hilton's reality show without retching, or doing an Elvis and shooting my TV. Even I am scared. An intervention may be in order.

Well as I've managed to get my bp out of the toilet for two seconds today, I thought I'd have a bash at perkiness. "Got to be in it to win it", or so they say. Whoever the hell 'they' are? I'm pretty sure 'they' may be in cahoots with the pathologically cheerful purveyors of religion who keep knocking on my door at 8:30am. I'm starting to think there must be some sign on my house indicating that I am in desperate need of salvation. Mind you if they came after my morning sanity coffee I may actually be more receptive, well probably not, but definitely more civil regarding their message, and not set my large dog on them (good boy Thor). They really need to get onto their market research people. 8:30 on a Saturday morning is not the time to try and convert the heathen masses. Hell, 11:30 on a Saturday morning is not the time to try and covert the heathen masses. Only the insane are open to conversion at this time.

But I digress.

When my kids were younger we used to have MLT time one day a week after school. MLT being Mummy, rug rat L. and rug rat T. time. We would go to a café and have hot chocolates or lime spiders and chat about their week. Both of them had some tough times with bullies and the like so to try and refocus them from the crappy aspects of school we always ended with them picking three good things about their week. So I thought today I should try and have MLT time for one ,and find three good things from the last few weeks (and try valiantly to live in denial about the rest).

Number one: I had to go to a talk at the eldest rug rats school about learning to drive. Sounds crap right? But no. I scored big time. First I picked up the youngest rug rat from basketball practice next door and brought us each a chocolate Twix bar. We won two free bars. Now in my sad little life this was enough to make me do a little jig in front of youngest rug rats basketball mates and embarrass the help out of him (this is compulsory in every mum's KPIs). Next we returned to the talk only to win first a little squishy toy in the shape of a VW. For those of you who don't know I love a little VW bug and have always wanted one, though a combi comes very close in the love stakes. Next we won a big box of chocolates. Then we won a $25 gift voucher for a music store. Score!!! We made up for a lifetime of never winning so much as a used piece of gum, in one night. There may also have been more embarrassing dancing in front of eldest rug rats teenage friends.

Number two: Some of you may know I had some excitement in my street the other day. For some reason a rather strange man decided that he would run up and down my street for a couple of hours wearing nothing but a pair of poorly fitting jeans. It was about 5C, being the middle of Winter here in Aus so it was bizarre from the out set. He was possible the hairiest man I had seen in a while and in desperate need of an Epilady across his back. I was tempted to yell "Run Forrest, run" out my lounge window but I didn't want to break his stride. Even better was the fact that at each lap, thanks to his poorly fitting jeans, more and more of his money box came into view. I could have lost $100 down that furry coin slot. Alas he must have tired, and eventually disappeared. I am hoping he comes back though as he did provide me with a couple of giggle-filled hours.

Number three: I won a blog prize. Mr London Street (MLS) gave me a nod as one of his three best posts for That Was The Week That Blogged (TWTWTB). It was for The Wonder Years, which I changed my mind about posting about a dozen time. I was lucky enough to win one of these last year for Farewell to the Brandy Hag, and I was equally chuffed this time. When someone, whose writing you admire gives you an award it's rather exciting. I have suggested MLS as a blog to follow before and will again (and not just because he gave me an award and said lovely things, though I am not adverse to bribery). As his profile says, he is "Reading's Premier Humourist. Occasional nookie ocelot. Highly conflicted purveyor of high class smut and melancholy to the masses". If you like your humour dry and your melancholy dark, he is your man.

Okay I made it to three. I will now focus on free chocolate, naked hairy men and bask in the glory of my accolade for a while. Hopefully this will lead me back to my happy place and my elusive Bedazzler. I will now attempt to drag my body out of bed (it's 3:30pm), scull water and chug salt in the hopes of getting my bp up enough to go out to dinner with my physio girls. I may need a mule or a sturdy Sherpa to get me up the mountain to the restaurant but damn it I'm getting there.

Insert the world's greatest motivational music, ever.

Cheers
The "blame it on the lack of oxygen getting to my brain" Michelle :)

Wednesday, 11 August 2010

(Stormy skies out the front of our house. Part of my #lookingup series)

Uncertainty has been one of the worst parts of becoming ill. It has stalked me since the first day I realised I didn't simply have a bug, and that something more serious was going on with my body. It fills you with an overwhelming anxiety. An anxiety that cannot be sated through determination or hard work. Uncertainty, is as unyielding as the hardest stone. Might as well attempt to stay a flood with a tissue, as create order in the chaos. It's been a constant companion for the past four years, and I hate it.

Bob is not a disorder with a clear path. Technically it is not even a discrete disorder, but a collection of symptoms for which the underlying cause frequently remains elusive. It is unpredictable. It waxes and wanes. Over months. Over weeks. Over days and frequently, over hours. It hides from view. Despite search after search it can remain hidden from public view for years. The elusive Bigfoot of the disease world. Known only to those who keep it's company. It is a disorder that refuses to play by the rules. It follows no logical path and leaves patient, doctors, and the wider world perplexed. I have lived with it for four years and I still fail to have more than a superficial understanding of it's nature.

You take on the role of plate spinner in a bizarre circus troop. Constant alert, waiting for the first plate to show a sign of the shakes. Never knowing which will be the first to fall. Rushing from spike to spike in a desperate attempt to keep all in a state of equilibrium. Failing time and time again, no matter how hard you try or how closely you adhere to the rules. Fear becomes your permanent state, only the degree ever varies.

Always that sense of foreboding. Always tension. Always exhaustion. Waiting in anticipation for the storm that you know with absolute certainty is coming. Always that feel in the air, the electrical tension as the atmosphere begins to change. Ears attuned for the first rumble of thunder in the distance. Face turned to note the slightest change in the wind. Never knowing exactly how far away or how violent the storm to come.

Living always anticipating the worst. Failing to see that the sun is shining in the present. Why allow yourself to enjoy the sun when you know it will be taken away? Surely that pain must be worse than that with which you are familiar. You create your own reality. An unwanted reality, one from which it feels impossible to escape. Without change, the storms fills your entire vision even when it is no longer present.

You cannot harness the weather. You can't will away the thunder or stop the wind with your hands. You are flailing against an opponent who you will never touch. An opponent who simply is, and is totally unaware of your efforts.

There comes a time when you must end the fight. Release a burden that you have created for yourself. The storm will come. But even the worst cyclone has an eye filled with peace. A peace that needs to be seen. That needs to be embraced for all it's wonder. The storm will be endured. It has come and gone so many times in the past. Each time you have picked up the pieces, and taken the first step. You will do it again. To sit waiting for the storm, so much is wasted. So much power is given to that which cares nothing for the giver.

Moments of peace, in any sense of the world, need to be cherished. To waste such moments in fear of the unknown, is to waste a precious gift. A sunny day in the middle of Winter is far more precious for the surrounding days of cold and rain. The sun comes in many forms. An unexpected kindness. A smile from a stranger. Coffee with a friend. Sitting out in the garden. A minimal symptom day. Only you can take away the sun on those days. A choice can be made to either wait for the storm, or to embrace the precious days of sun. I for one am deciding to choose the latter.

Wednesday, 4 August 2010

Having a bit of a blogging block, so I thought I'd re-post an article I wrote back in March for one of the Dysautonomia support groups I'm involved with, DARE.

I realised today that I have spent so long trying to minimise my illness that I have lost sight of what it really is, and how sick I actually am. Why I’ve chosen this path is complex. I’m not completely sure I can identify all the reasons why I do this, but I’ll try.

I know part of it is my attempt to shake my fists at the universe and say, “You can’t beat me”. To tell my illness that it doesn’t own me and that I am still me under my compression hose and gallons of water. You need to do this to survive. It’s hard to keep getting out of bed each morning unless a part of you says I can do this, no matter the reality of the situation.

I know part of it is that I am sick of being the token ‘sick’ person. I’m over it. I don’t want people to know how ill I am. I don't want the first question to always be about my health. I want them to see me rather than dysautonomia.

I know part of it is my strong aversion to pity. I would rather kill myself putting on my ‘well’ mask, pushing myself to the limits and suffering for the next week, rather than get the pity look or comments. They cut me to the quick and leave me with a sense that the word 'VICTIM' is being continually carved into my forehead.

I know part of it is that my ‘well’ baseline is now so much lower than those without chronic illness. How do you register a ‘sick’ day, when every day is a 'sick' day. Symptoms that were so strange and frightening at the start are like white noise now. I’m permanently dizzy. I’ve had 7 years of dizzy. I don’t really remember being non-dizzy anymore. If I didn’t wake up to nausea each morning, I think I may feel as though I’ve lost a part of myself (not that I’m not willing to give it a go). 'Normal' doesn't necessarily have to be a good situation, but it is familiar and that translates to a warped sense of comfort.

I know part of it is that I don’t look sick most of the time. Not that I go out in public when I am really ill. As those of us with dysautonomia have all experienced, people are happy to tell us we don’t look ill. They might as well scream “LIAR” each time, as it is frequently clear that there is a 'look' to being sick and like jeggings, it is something that I am yet to master.

I know part of it is that I used to work in a hospital. I know what ‘real’ sick looks like. I've worked in palliative care. I know what these patients and their families went through and, my illness seems so petty in comparison. Basically I feel guilty for saying I am sick.

I know part of it is I can’t stand people who wallow in their illness. Who roll around in every bit of pain and discomfort and seem to enjoy the sick role. A while back I was on a forum and the topic was related to severity of symptoms. What began as a a simple exchange of what each person was experiencing, became a game of oneupmanship. Certain posters tried to out-sick each other. Bizarre, and certainly not a game I ever wish to win.

I know part of it is that many of these same posters say, “I am super ill and yet I still manage to work, volunteer, raise my family, work on the PTA, cure world hunger, organise peace in the Middle East, and solve global warming. Those who say they can’t, have a bad attitude and are lazy”. Logically, I know they are tossers and would most likely be in every aspect of their life, but it still makes me feel less. So I fight through to try and do things that I know, in a moment of clarity, are far beyond me and fail miserably. I can’t even be sick right!

I know part of it is that growing up I was always taught to hide my true feelings. When I was ill as a child I was told I was a hypochondriac and to harden up. If things were bad we hid them and in turn hid ourselves. I was raised in a family where only the weak mentioned they were feeling unwell.

I know part of it is that incompetent and misogynistic doctor who told me it was all in my head. Thanks to a long list of cardiologists and neurologists, I know he’s wrong. But I still have that nagging little voice saying “you don’t have an illness you are just a nutter”. Stupid I know.

I can sit back. Put my psychologist logical hat on. Sit my illogical emotional self on the couch and ask that part of me to tell me about my mother (oh self, lets not go there, thats years of therapy) and pull apart my illogical reasoning. But often we are driven by those little voices that tell us how we ‘should’ behave. I hate those voices with a passion but I still hold them close, they are my 'frenemies' and it is hard to part with them.

The other day I had a bit of a reality check. I wrote a post about the good old ‘simple faint‘, on my personal blog. For those of us who experence this or even pre-syncope on a regular basis it just becomes part of the daily existance. But I was shocked by the comments and messages I received. People were truly horrified about the whole experience. I’ve had similar comments before about posts, where people wish for me to get better, but never the shock aspect.

I was taken aback.

Am I really that sick?

Am I really experiencing something so horrible?

I mean I know it’s not pleasant, but it’s part and parcel of living with dysautonomia.

Then it stuck me. I’ve been living with this so long that I’ve lost sight of what I am going through. My normal is so skewed from reality that I have lost the ability to see my dysautonomia with clear vision. If one of my loved ones was going through what I described I would be horrified. I would never judge them like I judge myself.

I realised that I don’t have to deny my illness to be able to live with it. It’s not about rising above it necessarily, but accepting it for what it is, and to find it’s place in the big scheme of things. I don’t need to minimise it to make it bearable, that only increases the load I have to bear. I’m going to bring it out of the shadows, not for anyone else, but for me. Admitting it does not make me weak, self-indulgent, or all the other negative names I can throw my way. It’s okay for me to be sick.

Now I’m not saying those little voices wont keep getting their way on occasion, I’m realistic enough to know that. But I also know that’s part of the process. It doesn’t have to be an all or nothing. It’s the journey to find a balance between the two.

They say that part of the solution is admitting you have a problem so I’m going to start: